The Endo LookBody Positivity Needs to Tackle Chronic Illness

We all know someone with a chronic illness. Given that 117 million people in the United States live with one or more chronic illnesses, we’re more than likely encountering someone in our workplaces, our homes, and our everyday lives who is navigating the ins and outs of sickness and the pain that accompanies it. Chronic illnesses are especially pervasive among women, and thanks to medicine’s long history of paternalism and ambient sexism, doctors regularly dismiss or disbelieve women who suffer with unexplained pain.

“In Sickness” is a weeklong series about chronic illness—and what the misdiagnosis, disdain, and marginalizing of people with chronic illnesses reveals about our culture.

“You’ve got the endo look,” he said. The specialist gestured to the burn marks on my inner forearm.

Sitting uncomfortably on a piece of paper, I looked down at the patchy redness that had developed from holding a heating pad, turned all the way up, tight to my pelvis for hours on end. “My thighs and my pelvis are covered too,” I replied with indifference.

“I know,” he said with understanding, without even seeing me undressed.

Almost two years ago, I was diagnosed with endometriosis, a chronic reproductive health condition that affects one in every 10 people with uteruses, although experts suspect it may be even more. Endometriosis causes pelvic pain, fatigue, back pain, and infertility, among other debilitating symptoms. Adequate treatment for it, as I would find, is rare, and in some cases prohibitively expensive. Diagnosing endometriosis takes an average of 10 years, and it is especially underdiagnosed in young women.

It all started when I was in high school—my period became irregular, first stopping for three months in my sophomore year, and then dragging on for three months in my senior year. My OBGYN didn’t seem to think much of it, and put me on birth control to regulate my cycle. Still, I was constantly being sent in for ultrasounds for mystery pains that never yielded any explanatory results. One night in college, after struggling through a particularly nasty bout of cramps, I passed out from the pain. In the ER they told me it was likely a UTI, and sent me home with antibiotics, despite my test results showing nothing of the sort. I remember the attending doctor that night saying quite matter of factly, “We see this all the time with girls of her frame; she’s young, she’s thin—it’s not uncommon.”

There were other signs too—pelvic pain and bleeding after sex, constant stomach problems, heavy, clotty periods. Most of them though were the types of symptoms we’re socialized to internalize, to explain away, to expect to a certain degree as people with menstrual cycles. But when I started my first year of law school, my cramps started coming on a full two weeks before my period. I was constantly nauseous, fatigued, and dizzy. That’s when an OBGYN mentioned the possibility of endometriosis to me, and, without explaining what that meant, sent me home with a prescription for 550 milligram tablets of Naproxen to take twice daily for the pain. It seemed to work at first, but a month later, my period came and went and the pain did not. It persisted for the weeks following my period, and straight into the next one, even more unbearable than the last.

I scheduled an appointment with a specialist in Boston who explained there was a procedure he could perform that would offer me some relief, and explained other treatments, like hormone suppression (being on continuous birth control) that would help maintain its results. The surgery confirmed that I had endometriosis. It was both validating and scary—I finally had an explanation, but the future was still uncertain.

My diagnosis took seven years, but that was not the end of the road for me. After the 45 minute procedure, which I was assured went well, things seemed to get better. But a mere two months out, I was in agony again, this time tenfold. The cautery surgery made the agonizing daily pain worse, and my surgeon started pumping me with hormones. They essentially sent me into early menopause—complete with full, stand-in-front-of-the-refrigerator hot flashes. They made my skin oily, made me depressed, and caused me to gain weight.

Trips to the big, fancy hospital with the tiny, cold waiting rooms with my mom grew routine. This isn’t working, now try that, my doctor would say, each time assuring us that this treatment would work. Cold fingers and plastic instruments poked and prodded inside me, and I laughed to think that I was once a girl who was nervous about gynecological exams. I would sometimes count to myself how many strange and new people I had spread my legs for, and how indifferent I had become to that immediate and sometimes awkward intimacy.

“Let’s send you in for an ultrasound,” my doctor suggested. Sitting in radiology, an attractive young couple filed in with a black-and-white printout of their sonogram. They fawned over it, kissing and holding each other blissfully. I tried not to worry if that would ever be me. I put an Ativan under my tongue and waited for my name to be called. As the ultrasound technician swirled the curved instrument in the jelly on my abdomen, I writhed in agony. My whole midsection was tender, and pressing on it felt as if it were covered in a bruise. Tears started to stream down my face from the pain. When I sat up, a nurse came in, glanced quickly at the black and white pictures, and told me nothing was wrong.

I felt like I was losing my mind. I wanted to trust my surgeon, who assured me his course of treatment would work. It was an elite hospital and he was the head of his department—but he and my body were telling me very different stories.

Months into being sick with no sign of recovery, my sorrow turned to desperation. Patients are often incorrectly told that a hysterectomy cures endometriosis, but the disease produces its own estrogen and can continue to survive and grow in a body without a uterus. My first surgeon used incorrect and outdated methods to treat the endometriosis, as is common, and explained to me that since cautery failed, my only options were more progestin or a drug they give to pedophiles to lower their sex drive. We settled on more progestin.

“If that doesn’t work, we can consider removing your ovaries,” he said, matter of factly.

I left the hospital that day and turned to my mother and said, “If this progestin treatment doesn’t work, I want to remove my ovaries.” I was 22. I spent the night, and many nights after it thinking about how I could afford to freeze my eggs, and how I would afford a surrogate one day, if it ever came to that.

I knew endometriosis could cause infertility down the line, but I was desperate for relief. At the same time, becoming pregnant, starting a family, seeing my children grow, were all things I’d wanted for as long as I can remember. I had a graduate degree to finish, a career to start—but all I was thinking about was what would happen if I couldn’t have children, or how I would explain that to a partner. I was worrying about how my parents would feel if I couldn’t give them grandchildren. It gutted me.

The most fraught relationship I now had was with my own body, and I had no idea how to handle that. I knew how to handle difficult people in my life, and I thought I knew how to love my body; I knew how to love the thin, fit, health body I had before endometriosis, at least. But I didn’t know how to love this body; this sick body, this body that had turned on me, that came between me and my ability to do everything I loved.

I always looked to the body positivity movement with admiration; it helped me accept my curves, and comforted me when I was beating myself up about gaining weight or hating my thighs. But when I was sick, I had a harder time finding myself in much of the messaging of mainstream body positivity, so much of which seemed to begin and end with size acceptance; I now saw the ableism inherent in so much of what I had come to understand as “empowering.” I began to understand the ways in which body positivity had been commodified to fit a capitalist purpose that, despite its intentions, still designates some bodies as lovable, and others as in need of improvement.

Instagram posts for major companies that featured able-bodied women of diverse shapes and sizes still felt exclusionary to me. I was housebound and unable to stand for long periods of time, so inspirational posts about exercising or loving your beach body only reminded me of everything my body couldn’t do. Size acceptance is immensely important, but there was a void in these posts—I realized that, disabled, or sick, or chronically ill people were largely being left out of the mainstream body positive conversation, despite their important and necessary perspectives on self-love and strength. I’d scroll pass posts on Instagram about “loving your shape” and “eating to stay healthy, not thin,” and “exercising to get strong, not skinny,” which were all sentiments that at one time I appreciated. But my shape was the least of my worries, and no matter what I ate or how much I exercised, I would not be strong or healthy.

In truth, I hated my body—this body made me think awful, sad thoughts, that made my future seem dark and uncertain, that made me want to tear away at it and remove parts of it. I hated that I hated it so badly I became indifferent to it. Sometimes I would look at the burn marks on my pelvis and thighs, trying to make myself care that I was marring my body, but to no avail. I went from being an independent person to being acutely dependent on my immediate family. I started to think about what living in this body, as it was, forever, would feel like. I didn’t know if I could do it; the constant pain, promises of treatments that were only making things worse. My doctor assured me that the surgery and treatments I was receiving had worked for others, and that my case was an outlier. So if he couldn’t fix me, who could?

By a stroke of immense luck, I found Nancy’s Nook, a Facebook group with stories just like mine—a failed surgery, some even at the same hospital I received mine, a spate of brutal hormone treatments, the possibility of a hysterectomy—except they were getting better after having something called excision surgery. I realized in not getting relief from a cautery surgery and hormone treatments, I was not an outlier, I was the norm. I was relieved but mortified; endometriosis is a common disease, but here were all these patients receiving treatments that were doing nothing but making them sicker; doctors offering them empty promises and troubleshooting their way through a course of treatment from which no one seemed to be improving. Meanwhile, here was a small but impressive group of skilled excision surgeons seeing results. Excision surgery is a technique where the disease is cut out, or excised, excavating it at the root, as opposed to cauterizing, which only addresses the superficial layer of the disease, leaving the roots to continue to grow and cause symptoms. I wasn’t nervous about another surgery, but it was my best option—my only option.

During my consultation, my new doctor explained why my first surgery failed, and what he would do different. He told me success stories about his patients who had struggled with pain and infertility, and who were able to lead pain free lives and conceive after excision surgery. He called me with a surgery plan a few days later. I would need a laparoscopy (four plus incisions in my abdomen for the insertion of instruments), excision of endometriosis (removal of the disease), lysis of adhesions (removal of the scar tissue and adhesions caused by the disease), an appendectomy (as a precaution—endometriosis can hide in the appendix), a hysteroscopy (to check for polyps and fibroids, which are common among people with endometriosis), and an ovarian suspension (to ensure that my ovaries wouldn’t drop and adhere to my pelvic walls.)

It was my second surgery in six months, and I was prepared for much of it; the way you scoot yourself onto the operating table while you’re half out of it, the warning that the anesthesia might burn, and so they give you something numbing to mitigate that, and that bright round surgical light above that makes you feel like you’re in a TV drama. When I woke up in recovery, after four and a half hours in the operating room, I felt like a bus had hit me. But this time, all the endometriosis pain was gone. Despite my first surgeon’s assurances that the disease had been removed, it was not only still there, it had gotten worse. My organs were covered in disease, and my uterus and my bladder had started to fuse. Every sample from my pathology came back positive for disease.

I realized my body wasn’t turning on me. It was communicating with me, letting me know something was wrong. It was my best ally all along.

Recovering is a process fraught with relearning things—relearning how to drive, how to socialize, how to live without the constant fear of pain and its escalation, and relearning how to love my body. Through pelvic floor therapy, a common treatment for endometriosis patients after excision surgery, I am helping my muscles learn that they can release the years of tension that have built up; they no longer need to brace for the agony. I’m now learning to love myself and my body more deeply than I ever have, and in a way that is no longer conditional. I can clearly see now that it was not my body that was deserving of hate, but my first surgeon whose advice would have left me with worsening, and permanent damage. The villain is the disease itself, which I am finally able to separate from the body it inhabited, and a society that stigmatizes menstrual health and tells women their pain isn’t real. The villain is doctors who gaslight their patients into thinking their pain is fabricated, and an ableist society that would rather have people with invisible or chronic illnesses or disabilities hate themselves and their bodies than provide them with proper medical care that addresses their needs and allows them to live full lives; the same society that leaves women and people of color waiting in emergency rooms for longer, and wanting for pain management.

I realize now that, like relationships we have with other people, the relationship we have with our bodies is not as polarized as all love or all hate. I’ve learned that what makes us love our bodies or hate them or feel indifferent to them changes over time, and is often more nuanced or complex than some arbitrary marker we give ourselves to define what a good body is supposed to be, or look like, or feel like. It is often not about how we feel about our own bodies at all, but how others confine, marginalize, and alienate the bodies we call home. I know now that body positivity is only as successful as it is inclusive and nuanced, and while size and shape acceptance is hugely important, bodies are so much more than that; our suffering, our emotions, our mental and physical health are all deeply interwoven with how we feel about the person looking back at us in the mirror.

Caroline Reilly is a student at Boston College Law School and a reproductive justice advocate. She has also written for Bust and Frontline (PBS). You can follower her on Twitter @ms_creilly, where she tweets about abortion rights, social justice, and being a feminist killjoy.

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